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Max’s Story: Part 2

As the post title suggests, this is the second part of our son Max’s NICU journey. If you haven’t read the first part, it would make sense to do so before returning to this post. You can find it here.

Day 2 –

Max’s bilirubin levels were measuring high and he looked very yellow so he was put on phototherapy for jaundice. We always knew this was a possibility because of him being prem, and having had a term baby previously with jaundice seemed to make it more likely (although I have no idea if that’s factual!). The hardest thing about that was him having to have his eyes covered (hilariously by a mask called an Eye Max) for days on end while he was under the lights. Not being able to hold your baby takes away so much of the experience of having a newborn so to not be able to see his eyes either is horrible.

Day 3 –

Things were improving today. Although we were told his initial swabs had tested positive for group b strep and that as a result they wanted him to have a lumbar puncture to check he hadn’t got meningitis. Although he wasn’t showing signs of it, the mere mention of the M word is enough to frighten any parent. I can’t imagine how horrific it would be to be told your child had meningitis so it was beyond a relief when the results came back clear.

Day 4 –

Today felt like an amazing day. Max was well enough to come off his ventilator and was coping well on optiflow. We got to hold him, just for 15 minutes each because he needed to go back under the photo therapy light. But that half an hour of cuddles was one of the best experiences of my life. Watching Dylan hold his son for the first time was truly incredible.

Just after, the midwife who delivered Max (Antoinette) came to say hello as she’d been doing a clinic down the corridor and then our friend Liz who works in the hospital as well came down to see Max at the end of her shift.

It felt like a good day. An amazing day in fact. I went upstairs to the postnatal ward (which was an awful place to be when your baby’s poorly! More on that later) feeling so positive. We knew they were trying to get Max moved back to the hospital in our town which would have allowed me to go back home and help Dylan who was trying to keep Alexandra in her routine. I was missing both of them a lot so the prospect was amazing.

Day 5 –

Dylan summed up this day as having the rug pulled from under you. He was right. There was no other way to describe it.

When I came down in the morning to see Max, it was immediately obvious he wasn’t feeling great. His chest didn’t look right when he was breathing and when the doctor examined him she said she wanted an X-ray done. The X-ray showed his right lung had collapsed. He was soon put back on the ventilator.

We were devastated. Looking at our tiny baby knowing his one lung wasn’t working was just horrible.

We tried to stay positive. We tried to reflect on the fact a baby who’d previously been in the cot next to Max had died that day and remember how lucky we were. But even now thinking back on that day makes my throat feel lumpy and my eyes sting.

Day 6 –

I was discharged from the ward and given the keys to a parent accommodation flat. Getting off postnatal was a huge relief and it also meant I could leave the hospital to get some food shopping and do some other errands. By this point Dylan and I had hardly spent any time together in over a week. It’s incredibly isolating to have a poorly baby, you’re constantly surrounded by people but not your family and friends. You talk to nurses and doctors constantly about their medical condition but you don’t get that privacy and time to talk to your husband about how you feel, to cry until your head hurts or just to lie down in a dark room for half an hour in silence.

Days 7, 8 and 9 –

Writing this a week on I’m struggling to remember these days. Each day passes in some sort of weird haze, punctuated by meds and nappy changes and discussions with doctors and X-rays and blood tests and tears and hopefully some smiles too.

Each day you wake up just hoping for some stability and for nothing to go horrendously wrong that day.
By day nine, Max was well enough to be extubated again and we dared to hope that this might be a turning point.